Hyperoxaluria – RDG

Provide up to date support for patients and their families though links with the Oxalosis and Hyperoxaluria Foundation

Increase the knowledge and understanding of Primary Hyperoxaluria and Oxalosis in order to improve its clinical management

Provide clinical information on dialysis and transplantation

Increase the knowledge of clinical presentation and outcome of Primary Hyperoxaluria by building a comprehensive UK database (RaDaR) that will link with the European OxalEurope database and subsequently with the International Hyperoxaluria Registry

Foster national and international partnerships to promote scientific innovation and research in Primary Hyperoxaluria and facilitate applications for funding for research collaboration

Create a forum for UK clinical studies on Primary Hyperoxaluria, including trials with orphan drugs

Foster genotype studies on Primary Hyperoxaluria

Co-operate in order to obtain funding for research activities through industrial or public partners in order to facilitate the dissemination of the results deriving from scientific research

On Saturday 27th April 2013 the first UK PH Patient Information Day was held at Birmingham Children’s Hospital. Over 60 patients and families from across the UK and Europe attended talks by specialists in both paediatric and adult nephrology and surgery.

Topics covered included the genetics of PH, drug treatments, dialysis and transplantation. We were also delighted to present Kim Hollander, Chief Executive of the Oxalosis and Hyperoxaluria Foundation, who kindly provided funding for the Play Centre to entertain the children during the day.

Copies of the presentations from both events are available here, along with comments from attendees.

Clinician Meeting

A Primary Hyperoxaluria Clinician Meeting was held at Birmingham Children’s Hospital on Tuesday 3rd March 2015. For more information please click here.

Research Registries

The Hyperoxaluria Rare Disease Group (RDG) is working with international partners with the aim of finding new and improved treatments, and to empower patients. A first step is to compare the symptoms and genetic markers of PH. To do this the RDG is registering patients with this condition into two research registries. The first is the UK-based National Renal Rare Disease Registry (RaDaR) which will be used to find suitable participants for future research trials into the effectiveness of new treatments.

The second is the International Hyperoxaluria Registry run by Oxal Europe, the European Hyperoxaluria Consortium, which aims to compile a global registry of Hyperoxaluria patients. Patient information in both registries is anonymous and cannot be linked to individuals.

Grant applications were submitted for an OxalEurope European Hyperoxaluria Registry to be established and to link with the established USA Rare Stone Disease registry. These proposals have been supported by the Oxalosis and Hyperoxaluria Foundation (OHF) with the aim of establishing an International Hyperoxaluria Registry.